How did you become interested in using the telemedicine platform?

Dr. Matthew Galsky: Only a small portion of patients throughout the world, and in particular, the United States, enroll in clinical trials. Yet, this is really the only way that we advance the field in terms of understanding the risks, benefits, and comparative effects of new treatments. We noted that the conduct of clinical trials in the United States had several inefficiencies that could be addressed with technological solutions.

One of our initial studies looked at a large group of clinical trials that had been done in the United States and that had been captured in a large, public database. We looked at thousands of clinical trials done in the United States over a period of about a decade. About 25% of those clinical trials closed early due to poor accrual: not enough patients enrolled in the studies. The studies ultimately closed and didn’t answer the questions they set out to answer, which is a huge waste of financial and patient resources. The patients who enroll are altruistic and want to advance the field. But their participation did not accomplish what they had signed up for. This is a big problem.

Our next study was related. We looked at the zip codes of all of the sites that had open trials, we matched those to different cancers in the United States, and then we asked a very simple question. What was the average distance that a patient would need to travel to reach the nearest clinical trial? We focused on trials for some major cancers: prostate, lung, colon, and breast cancer. We found that 40-50% of the population resides greater than one hour driving time, one way to the nearest clinical trial site.

Wow! That’s far.

Dr. Galsky: It’s far and prohibitive for a large number of patients. It’s not surprising, but it’s disappointing.

We have one problem, that we don’t have enough patients enrolling, and then we have this related problem, that the studies are not geographically accessible to patients. This really hit home.

A study published in the Institute of Medicine in 2010 reported that clinical trial sites are typically opened where the nvestigators are located rather than where the patients are located.

That makes sense.

Dr. Galsky: Absolutely. But it creates barriers to enrollment.

We thought there might be a technology solution to this, and so we set out to test the feasibility of a prospective clinical trial with an intervention (studying a drug in prostate cancer), enrolling patients who lived at a distance by replacing the on-site study visits with telemedicine study visits.

It was a small study to establish proof-of-concept for this approach. The intervention was a drug called metformin, which is FDA approved for the treatment of diabetes. In various epidemiologic studies, it has been associated with potential anticancer activities and specifically anti-prostate cancer activities. For this pilot study, we had patients come to our site to enroll in the study because we figured that would require the least number of visits and at least one face-to-face interaction.

After that visit, the rest of the study was conducted by telemedicine, so patients took their pills at home. This medicine is oral. It’s a pill. We connected with them via telemedicine visits once a month to review their side effects and the numbers of pills that they had taken or missed. The patients had laboratory testing done locally with the results sent into us.

We were ultimately able to show that this is feasible in this specific context. Obviously, the deck was stacked in our favor to ensure we could do this safely, but it was possible.

Break down what you mean by telemedicine. Was this email contact?

Dr. Galsky: This involved video visits with patients. We had to use a platform that was HIPAA compliant and optimized for security, so we partnered with a company that had developed a technology they were using for purposes outside clinical trials, such as trying to prevent hospital readmissions by having nurses monitor patients remotely.

We gave patients a mobile device at that initial visit, a Samsung phone running the software for this platform. On our end, we connected with the software loaded on our desktop computers. With these tools, we were able to conduct video visits once a month.

Did you do any training for the participants?

Dr. Galsky: We did about ten minutes of training at that initial visit, and then we had prepared a pamphlet with troubleshooting questions and answers.

What can you conclude from your results?

Dr. Galsky: The primary endpoint of this study was to show that telemedicine was feasible. We defined feasibility as greater than two-thirds of the enrolled patients completing all of the eligible telemedicine visits. Each patient on the study had six planned telemedicine visits, but if they went off of the study because their cancer progressed, they had less than those six visits. Six visits per patient times 15 patients enrolled, means 90 total visits. We conducted 84 televisits with patients during the course of the study, so we met that primary endpoint of feasibility.

If patients had to go off the trial because their cancer progressed, that’s not really a failure as far as the telemedicine element, is it?

Dr. Galsky: Exactly. The primary endpoint was feasibility.

The secondary endpoint was safety and effects of the drug. We saw that seven of the patients had a minor decline in PSA while on the study.

So, metformin may have some activity warranting further evaluation of the treatment.

We did questionnaires at the end of the study regarding the patient’s rating of their experience with the telemedicine approach. We asked whether they would participate in a similar type of study in the future, and the majority agreed or strongly agreed that they would.

You made it easy for them to participate.

Dr. Galsky: That’s the key; absolutely.

What does this mean going forward? Should this kind of approach be integrated into more trials?

Dr. Galsky: There is certainly the ability to integrate telemedicine into existing studies using lower toxicity oral interventions to replace some of the study visits. That’s low-hanging fruit.

In terms of expanding to more complicated areas, there is potentially a pathway for investigational sites to partner with local groups to offer trials that are monitored and conducted on a remote basis with local physicians at the bedside. This is similar to what’s happened in the intensive care unit field.

There are a huge number of intensive care units within the rural United States that are staffed and monitored by intensivists that are sitting miles away in front of computer screens and interacting with the nurses and the physicians at that hospital just to manage the patients.

If it can be done for some of our sickest patients, then certainly there is a path forward to do this in other contexts. It’s just a matter of making sure that the regulatory environment is ready for this and that there is a buy-in from all of the stakeholders involved. We have proof that we can think differently about our entire clinical trials enterprise if we want to.

What do you think about extending that towards prostate cancer care or general cancer care?

My colleagues here and at other institutions are already doing second opinions appointments via telemedicine. They’re doing postoperative visits via telemedicine. For prostate cancer and for other genital urinary malignancies like bladder cancer, where there’s been a centralization of surgeries and patients travel a distance for their surgery, then return to the care of their local teams, the ability to do postoperative checks at a distance offers the potential for significant value added. There is a range of applications for this type of technology.

Ms. Jina Ko is a PhD student in the Department of Bioengineering at the University of Pennsylvania. She was among 14 PhD candidates from the U.S., Canada, and Germany to be named to the inaugural class of Schmidt Science Fellows. Ms. Ko works in the lab of Professor David Issadore on microfluidics and lab-on-a-chip technologies.

Dr. David Issadore is an Assistant Professor of Bioengineering and Electrical and Systems Engineering at the University of Pennsylvania. Dr. Issadore’s research focus is on applying microelectronics, microfluidics, nanomaterials, and molecular targeting to medicine. His lab explores how these new technologies can bring medical diagnostics from expensive, centralized facilities directly to clinical and resource-limited settings.

Ms. Ko and Dr. Issadore spoke with Prostatepedia about a platform for diagnosing pancreatic cancer via liquid biopsy and machine learning, a technology that can be applied to other cancer types, including potentially prostate cancer.

What drew each of you to the world of bioengineering?

Ms. Jina Ko: I did a lot of internships as an undergraduate student working on biomechanics, point-of-care diagnostics, and all things cancer biology. I got interested in diagnostics because, even though there are goodcurrent treatment options and emerging treatments, if we don’t have good diagnostics to guide patients to the right treatment options, they cannot really benefit. Good diagnostics that guide patients can be a huge bridge to connect patients to treatments.

In terms of pancreatic cancer, everyone’s diagnosed really late, when they already have metastases.

I saw that as a good chance to develop early stage pancreatic cancer diagnostics: to detect them before metastasis, so that we can increase the survival rate.

Dr. David Issadore: My training is in physics and electrical engineering. I trained to design computer chips and got into diagnostics because I became interested in whether or not the same approaches that reduced costs could be applied to medicine.

In the 1960s, electronics were only accessible to big institutions and people with a lot of money, but now, everyone has access to cellphones and laptops. I was interested in whether or not we could do the same thing for medicine, to make ultrasensitive diagnostics that do nearly impossible things and solve intractable problems by miniaturizing and integrating them. That’s what we do in my lab here at the University of Pennsylvania.

For her PhD, Jina had a brilliant insight into a new device. She took it all the way from a drawing on the back of an envelope to something we use on patient samples to diagnose disease. She did that in five years, which is rare and pretty incredible.

You’ve worked on two main projects: integrating microchip-based technologies with machine learning for liquid biopsies and integrating nanofluidic technology with machine learning to diagnose cancer. Can you tell us a bit about that work?

Ms. Ko: Our platform is a combination of those two projects: our approach looked at liquid biopsies to find blood-based biomarkers so that we can minimize invasion for biomarkers rather than doing invasive biopsy. For biomarkers, we focused on exosomes, which are small particles that circulate in the bloodstream. Exosomes are great as biomarkers, because they have good molecular information of their mother cells. For example, it’s really hard to get at pancreatic cancer cells because of invasive biopsy. But we can derive pancreatic cancer cell exosomes from the blood. The challenge is that they’re really small, on the nanoscale at only 100 nanometers in diameter.

So, we need a good tool to isolate those exosomes and profile them for the molecular signature.

At first, we developed tools that can isolate specific types of exosomes, so that we can enrich the exosomes

and profile them. Even though we profiled the exosomes, we noticed that if we just look at one expression level, with molecular cargo like DNA or RNA inside, we can cover the heterogeneity of different patients.

Also, pancreatic cancer is heterogeneous. That’s why we used machine learning rather than profiling individual RNAs from exosomes. We thought we could find a pattern, a combination of biomarkers so that we can find orthogonal information and the signature inside. We applied machine learning to decrease multidimensions into a single score.

That score can then tell us whether a person has pancreatic cancer.

And how accurate was it?

Ms. Ko: We started with three mouse model groups. One group was healthy, one had tumors, and the third group had lesions in the pancreas, but they did not yet have a tumor, which is considered pre-cancerous.

In the three-way comparison, we got 100% accuracy, but it’s a small size sample. There were only about 20 mice, so we definitely need to increase the number to ensure that it’s an accurate representation. We applied it to clinical patients where we classified metastatic pancreatic cancer patients to healthy controls. In that study of 24 patients, we got 100% accuracy as well.

100%?

Ms. Ko: Yes. Even though it’s a small sample size, we got extremely accurate molecular signatures from exosomes. We really want to apply this to earlystage pancreatic cancer patients, to screen some risk groups. We want to be able to predict if people were going to develop pancreatic cancer at a later stage before the disease appears.

Dr. Issadore: The next step of early detection in humans is challenging because we need to measure a lot of people and only some of them are going to get cancer. This study lays the groundwork to take that next step, and we’re gearing up to do that.

Do you have any plans to study different types of cancer, or will you just continue looking at pancreatic cancer?

Dr. Issadore: No. We want to branch out. Every cell in the body sheds these exosomes, and the machine learning approach allows us to look for signatures without having to understand the underlying biology. This means that, as long as there is a signature—a difference between cells that are cancerous and cells that are healthy—this technique should work for any type of cancer.

It will be a challenge to find the right animal and clinical models to develop early detection, so we’re working with collaborators at the Abramson Cancer Center. Together, we will link this technology with models of breast cancer, leukemia, and many others.

We’ve also taken the same approach and applied it to different diseases. We’ve tried it with traumatic brain injury and have had exciting results. It’s a pretty general technique.

Ms. Ko: Whenever we talk about 100% accuracy in science, people are a little suspicious because it’s pretty rare. To validate that level of accuracy from the pancreatic cancer molecular signatures that we found, rather than some random artifact from machine learning, we trained the algorithm with wrong labels. We shuffled the labels and eliminated the molecular signatures on purpose, and then we trained the algorithm to make sure that it failed.

One hundred percent does sound too good to be true.

Dr. Issadore: You have to do a lot of controls, which we did. It wouldn’t be 100% if we had 1,000 or 10,000 samples. But for the members we tested, it was perfect.

You said the obstacles to moving forward are just getting enough people to test? Any other obstacles to the process?

Ms. Ko: Increasing the sample size can be one option, but we want to also find a subgroup classification that can help with clinical decisions. We are looking at short survival versus long survival patients to find signatures there. We are also looking at metastatic patients versus no visible metastases to better understand metastases.

Dave Fuehrer is the CEO of Gryt Health, creator of the most used app in all of oncology–Stupid Cancer.

Prostatepedia spoke with him about his Stupid Cancer app and about how Gryt partners with pharmaceutical companies, hospitals, and healthcare organizations.

How is it that you came to create an app for cancer patients?

Mr. Dave Fuehrer: Out of personal agony. I was diagnosed with cancer twice in my twenties. I went through all of the surgeries and radiation, lost my ability to be a biological father. I really struggled with all the side effects. Ironically, at the time, I managed research projects for Pfizer. You would think that if there were anybody equipped to look for help or find resources, it would have been me. But I was so full of shame, which I wasn’t able to overcome.

Three years after my second diagnosis, my father was diagnosed with bladder cancer. He passed away, and

I couldn’t continue in life being a researcher and unable to help my own family. So, I left my career at that point and have been doing this ever since.

So it’s really personal then.

Mr. Fuehrer: Very personal.

Why did you name your company GRYT Health? What does grit mean to you in relation to your own two-time cancer diagnosis, your father’s journey, and what you’re trying to do?

Mr. Fuehrer: We started out with a different company name— SC Research Ventures—because we believed that we would use research to help improve the experience of cancer. Then, we realized that we’re not just researchers, and we don’t just do something—we live it.

Our chairwoman, Shelley Nolden, is a young adult APL leukemia survivor who spent 40 days in the hospital fighting for her life. While we were coming up with a new company name, she wrote a blog about having the grit to get through cancer. We all had to find our grit, so we wanted to name our company after that shared experience. One of us looked at the other as said, “We have to spell it with a Y because there is no I in grit. It’s a team sport.”

I love that. Your first project was the Stupid Cancer app?

Mr. Fuehrer: Yeah, absolutely. We started the Stupid Cancer app more than four years ago. It was a concept to see if we could create something to help people connect.

We built a pilot beta version that we ran from 2013 to 2014. We had a quarter of a million user interactions during that year. It really showed us how significant the demand was, but that we needed to find a business model, a way to make it sustainable.

We founded GRYT to do that. We worked with the National Cancer Institute (NCI). One of my cofounders has a mentor at the Office of Cancer Survivorship, and she told us about this program called the Small Business Innovation Research (SBIR), and how NCI has all these wonderful initiatives. We got some amazing coaching from some of the top researchers in the cancer space.

How does the app work?

Mr. Fuehrer: We spent two years working on building something around our community, not around a specific goal. When a company does research, they decide to research this type of patient with this type of disease who is experiencing this type of side effect, and they go design the survey to do it. Then, they learn things in a very specific area. We saw that’s not how people live.

We wanted to build something around the way people affected by cancer live. We spent two years working with our community. We published a couple of papers. We’ve been at the Society for Behavioral Medicine conference the last two years presenting our results.

The Stupid Cancer app has been engineered around the way our experience of cancer affects us. We have a proprietary algorithm that looks at what your primary diagnosis is and at the stage you were diagnosed, because somebody with a Stage 1 cancer has a very different experience from somebody with a Stage 4 cancer.

We look at the treatments you’ve been on. We created this platform to help you connect with somebody just like you who knows what you’re going through without you having to explain it to them.

So, it’s a way to connect with other patients like you?

Mr. Fuehrer: Exactly, right.

Are those interactions one-on-one or are they part of a larger group, like a support group?

Mr. Fuehrer: They are both. We launched The Stupid Cancer app October 1st, and we have had 400,000 interactions since then. A little more than 75% of those are private messages one-to-one.

The other quarter interactions are in chat rooms around specific topics. We have moderators come on who are experts in an area, so the other quarter activity is around dealing with issues like depression or side effects. We have a book club. It’s just the experience of being with others.

When you create a profile, the app instantly matches you with others just like you. For me, I’m connected with other two-time testicular cancer survivors who know what that shame is like.

They ask me questions like “I don’t know if women are ever going to find me attractive anymore. Am I still a man?” These are things that are too hard to talk through in person or to even admit.

The anonymity of the app allows people to say more than they might in an in-person support group? Can you talk a little bit more about that dynamic?

Mr. Fuehrer: Absolutely. The hardest things to say are the things that need to be said the most. I’ll use myself as an example. I didn’t know if I was still a man anymore. I went from being a 20-year-old athlete to my wife leaving me because I couldn’t have kids, to not being able to perform sexually. My body parts stopped working. In those trauma moments, the things that we’re too embarrassed to say are the most important things to deal with, and they’re often not dealt with.

The whole purpose of this anonymous platform is to give you a place to say what you need without worry about being judged or someone knowing you and thinking differently of you. I’m in awe every day of the types of things people are able to explore, like women in their 30s going through menopause being able to talk to somebody in that situation without being judged. It’s life changing.

There’s no risk of running into that person later.

Mr. Fuehrer: That’s exactly right.

This dynamic comes up a lot in prostate cancer. The attitude can be: “You’re 70. Who cares if you have erectile dysfunction? Does it really matter?” To those men, it does, and it’s difficult for a lot of them to talk about it, even with their own doctors.

Mr. Fuehrer: I was excited to talk to you because prostate cancer is rare in that there are many treatment options, and the only difference is how each affects your life. You can have the same medical outcome from a couple of different approaches. Are you comfortable with cancer in your body, or do you need to have it removed? That’s personal choice, but each makes tremendous differences in your life.

Those are the kinds of things that people need help exploring because if you’re not thinking about one versus the other, you may make a decision that, six months from now, has turned your life upside down, when you didn’t expect that to happen.

Right. For most men, prostate cancer isn’t an emergency situation, so the time for them to be talking to other men with prostate cancer is before they even make that treatment decision.

Mr. Fuehrer: Yes.

Do you have many users with prostate cancer on the app?

Mr. Fuehrer: It’s not one of our larger populations. Our most active populations are people with rarer or sensitive conditions, including genetic mutations, people with advanced cancers, and rare cancers because it’s hardest for them to find anybody who relates. We find that they are the most active groups on the platform. I really care about people who aren’t in immediate crisis situations because we still have needs. My needs, for example, aren’t usually crisis. They’re more about how I want to live my life.

For people with prostate cancer, this app won’t help you make a treatment decision for tomorrow. This is a very different thing, a resource for you to anonymously figure out how this will affect you.

Right, or even the other way around. Thirty percent of our readers are support group leaders, so if each of those support group leaders went on and offered support and advice to other men, they could reach a lot of people they wouldn’t normally reach, right?

Mr. Fuehrer: I would love to invite any of those individuals to lead a chat on our app because we have users who don’t know they’re there. If any readers want to come on and be moderators, I would love to put their expertise in front of our community.

Great, how would they contact you? Directly, or should they just go on the app and mention it in one of the chats?

Mr. Fuehrer: They can contact me. Our program director, Aerial Donavan, works with individuals to set those up, and we help lead it with them.

What other programs do you offer at GRYT?

Mr. Fuehrer: Everything we’re doing at the moment is through The Stupid Cancer app, but the organizations that we work with are pharmaceutical companies, health systems, large hospitals, and healthcare organizations. My entire role is to identify resources that address the needs of people on our platform.

For example, someone in Wichita doesn’t know about all the treatment options at MD Anderson and Memorial Sloan Kettering. My mission in life is to make sure that wherever you are, you know what’s available so that you can make the right decision for you.

Have you thought at all about using it in clinical trial research?

Mr. Fuehrer: Yes. We have a partnership with a pharmaceutical company that’s running a Phase III clinical trial on a genetic mutation. We let people on our platform who have those tumor types know about this information.

One of the women with that tumor type wrote back and said she’d been asking her medical team for three years if there was a genetic sequence for her tumor, and they’d been saying there wasn’t. She wondered how the trial could be available and her medical team at her hospital say there is nothing for her. We connected her with that company, and they provided no-cost genetic sequence. It changed the whole course of her treatment.

Is there anything else we should know about GRYT and Stupid Cancer?

Mr. Fuehrer: The most important thing is connection. This is a resource for people to start. Connection is what opens you up to everything else. Whether somebody is looking for someone else who understands them, other treatment options, the people at Dana-Faber, or a way to get that information to patients, connection is what enables all of that to happen.

Also, we believe that caregivers are just as impacted as patients. This platform is not just for those diagnosed. It’s for anyone affected by cancer.

We’ve paid a lot of attention to onboarding, so when you sign up, we don’t ask if you are a patient or a caregiver.

My brother looked at our process and said: “I’m neither patient or caregiver. I wasn’t diagnosed, and I wasn’t yours or dad’s caregiver.” I realized my brother has gone through cancer alongside two immediate family members, and he doesn’t feel welcome. So, we’ve designed everything to welcome those who’ve been affected by cancer. We don’t use labels to define people.

That’s a dynamic at play in the prostate cancer world. We talk about significant others a lot, but often it’s adult children doing the research and then providing it to a parent, who then goes and gets treatment. It’s a family disease.

Mr. Fuehrer: Totally. In pediatrics, for example, it’s the parents. And it’s also the 20 and 30 year olds on the platform. And for older generations, it’s their kids—me—looking for help.

Dr. Paul Nguyen is an internationally recognized expert in prostate cancer clinical care and research. He has published over 250 original research articles, has various national leadership roles and is the Dana-Farber Cancer Center Genitourinary Clinical Center Director for Radiation Oncology, Vice-Chair for Clinical Research in the Department of Radiation Oncology, and Associate Professor at Harvard Medical School.

Prostatepedia spoke with him about collaborations between healthcare and tech industries for prostate cancer.

Have you had any particular patients or cases that changed how you view your role as a doctor or how you practice medicine?

Dr. Paul Nguyen: Several years after treating him, I heard from a patient who recounted for me what it was like to meet with me when he had first been diagnosed with recurrent disease. He said he’d had a lot of uncertainty and anxiety about his future. He said that the way I spoke with him had changed it entirely for him. He said I had a plan for him, knew exactly what we were going to need to do, and that we were going to do it.

I didn’t do anything particularly different in that encounter than I normally do, but hearing that made me realize how patients really hang on our every word, our every facial expression, our every cadence, and the emotion that we project when we speak. This made me so aware and conscious of making sure that, at all times, in every encounter, I have that combination of being sure about what I need to do and maintaining hope and optimism in every part of our discussions.

That was a good learning cycle for me. I hadn’t thought of it that way when I was with a patient. You just don’t think that every intonation, every gesture has such a huge impact. But it does. That was a very valuable learning experience for me that has really shaped how I think about every patient encounter before I walk into the room.

What are your current research projects? Which are you most excited about?

Dr. Nguyen: I have spent my entire career using information from the medical record about patients’ health status and tumor characteristics to figure out which men should get hormone therapy and for how long. Now, I’m incredibly excited about the opportunity to unleash the power of genetic testing of tumors. This will help us understand, on a genetic and molecular level, which patients should be given hormone therapy and for exactly how long. This will be a lot more precise than the clinical information by itself. I’m working with Dr. Felix Feng and others, which has been a wonderful collaboration.

How do you see evolving technologies impacting prostate cancer research? Dr. Nguyen: Technology gives us opportunities to do the kinds of studies we never dreamed possible, which is amazing.

I’ll give you an example. Dr. Feng and I are about to take prostate cancer samples from biopsy tissues taken 25 years ago from men who had cancer, samples stored without a clear purpose in mind. I give a huge amount of credit to the people who designed these studies in the early 1990s. They had no way to analyze this tissue, but they knew that someday, this tissue would be important to humanity. There wasn’t a specific test that they were storing these samples for, but they knew some kind of technology could decode what was going on in those tumors, to study how the tumors work, and who should get which treatment.

I feel so fortunate to come along 25 years later, when we do have the technology to analyze this tissue, and research it. This is the research I’m about to do now, which would never have been possible without new technologies.

Do you see technology impacting how we design clinical trials from the get-go?

Dr. Nguyen: Absolutely, because now people are designing trials with technology. There’s a trial being led by Dr. Feng from UCSF and Dr. Dan Spratt at the University of Michigan that incorporates genetic technology.

All the patients are tested upfront with this new technology to help decide which arm the patient goes into, which is really cool. This new scientific technology is being worked into clinical trial design.

Which innovations or technologies have the biggest impact?

Dr. Nguyen: There are two kinds of impacts. One is the ability to do large-scale genomic studies for a relatively low price. That has been a game-changer because it used to be so expensive to sequence the DNA of patients, but now you can approximate that rather cheaply and then do studies on thousands of patients. This way, we can pick up very small signals, which are very valuable.

The other invaluable impact is the ability to detect very minute amounts of tumor in the blood, very tiny traces that can tell us a lot.

In the circulating tumor cell?

Dr. Nguyen: Exactly.

Do you think artificial intelligence will play a role?

Dr. Nguyen: For sure. I’ve spent most of my career working on simple, clinical data. You can see the patterns of simple data yourself by doing simple statistical analyses. But now, the patterns are much more complex. Instead of five datapoints, you might have two million datapoints per patient. So we need AI. We need sophisticated machine learning to help us discern some kind of pattern out of that huge amount of data, to help us make sense of it.

Are there any specific collaborations, other than the ones we’ve already discussed, that you think look promising?

Dr. Nguyen: We’re seeing a lot more collaborations across specialties and disciplines to get research done. So much of what we’re seeing now is team science whereas people used to do studies with their own group.

Now, if you look at a paper, it’s not just one group or one discipline. At each institution, it’s five disciplines, and then you might have ten institutions on a paper, each contributing something different because that’s just what it takes now.

Every group has its own, little special expertise that gets put together to get a big paper or a big trial done. That’s what has really exploded. We’ve all recognized that, in order to get good science done, we have to team up.

Is just it easier to collaborate with people now via email and sharing of data? Or is there something about the way cancer research has been funded that has fostered that collaboration?

Dr. Nguyen: Yes. Those factors definitely contribute. It is definitely easier to share data now with the internet. Efforts to fund team science have definitely led teams to be created that might not have been created organically before.

There’s something fundamental about the increasing use of technology in studies and trials where only certain groups have this kind of technology expertise. You might have one group that knows a lot about the technology and another group that has a large number of patients and ideas. And you have to reach outside of your little sphere in order to get these kinds of exciting studies done.

It seems like before everything was pretty much siloed: you had tech, you had healthcare, and then, within healthcare, you had prostate cancer versus pancreatic cancer versus breast cancer. But now, the walls are coming down between those silos, with things like increased genetic testing. Would you say that’s true?

Dr. Nguyen: Absolutely. For example, some of the cool studies done in prostate cancer genetics were modeled on similar research done in breast cancer genetics several years before. Breast cancer had the Oncotype study, and then prostate cancer developed the Oncotype test many years later. We’ve seen molecular subtypes of breast cancer (luminal A, luminal B, and basal), and now there’s a study led by Dr. Feng suggesting that you’ve got similar kinds of subtypes in prostate cancer. We have to be knowledgeable about other fields. You can’t just be in your own silo now.

Last week, I spoke with engineers at University of Pennsylvania who are working with microchip-based technologies and machine learning to increase liquid biopsy’s usefulness in pancreatic cancer. They said this allows them to process much more data than they could before. They hope this has potential in other cancers. I know that’s more along the lines of diagnostics than what you’re doing, but do you have any thoughts about that?

Dr. Nguyen: We are all trying to take those same kinds of approaches with the folks who do machine learning. We need them desperately now because we’ve got so much data, and we just can’t figure it out on our own.

This month, Prostatepedia explores collaborations between tech and health care in the world of prostate cancer. Long gone are the days in which individual doctors and scientists operate in silos to both treat patients and conduct research.

Large multi-institution and multidisciplinary collaborations that leverage emerging technologies to both collect data and to make sense of that data are the name of the game.

In our first two conversations, we feature two leaders in prostate cancer today—Dr. Felix Feng of the University of California, SF and Dr. Paul Nguyen of the Dana-Farber Cancer Center. Both discuss current projects that exploit emerging technologies and speculate about what the future might—they hope will—hold.

Dr. John Wilbanks of Sage Bionetworks discusses his company’s role in the National Institute of Health’s newly launched precision medicine initiative All of Us. (Some of you may remember a conversation with another Sage Bionetwork member, Dr. James Costello, in Prostatepedia’s May 2017 issue.) Dr. Wilbanks offers a unique perspective; his former role as the executive director of the Science Commons project at Creative Commons placed him at the intersection of tech, health care and patient advocacy arenas. All of Us would love men with prostate cancer to participate in the project.

Ms. Jina Ko and Dr. David Issadore of the University of Pennsylvania discuss using liquid biopsy and machine learning—or artificial intelligence—to diagnose pancreatic cancer. They argue that the technology they’ve developed should work for any cancer type, including prostate.

Dr. Matthew Galsky of the Tisch Cancer Institute discusses his efforts to incorporate telemedicine into clinical trials. As we learned in our conversations about prostate cancer clinical trials last month, the distance that you have to travel in order to participate in a clinical trial can often be a deal-breaker.

Mr. Dave Furher of Gryt Health introduces us to Stupid Cancer, an app that connects patients. Mr. Fuehrer is keen on getting more prostate cancer patients to lead in-app chat rooms. Those of you who lead support groups may be interested in participating: this is a way for you to reach men outside of your local communities, men perhaps isolated and in need of support.

In his quarterly column, Mr. Jamie Bearse of Zero discusses an astounding increase in federal funding for prostate cancer research. Zero’s tireless work on Capital Hill benefits all men. If you haven’t yet, take a look at their website to review some of the work they do and the tools they provide for men like yourself.

Finally, Gary tells us about his own prostate cancer experience and offers advice for those of you in a similar situation.

Our conversations this month underscore the tremendous changes happening in the world of prostate cancer The next five years will totally revolutionize the way we diagnose and treat prostate cancer as well as the way in which we conduct research about the disease.

Eric A. Klein, MD, is an international leader in the biology and management of prostate cancer. Dr. Klein serves as Chairman of the Glickman Urological & Kidney Institute at the Cleveland Clinic.

Prostatepedia spoke with him about why he became a doctor.

Why did you become a doctor?

Dr. Klein: I don’t really know. I never remember wanting to do anything else.

Even when you were a little kid?

Dr. Klein: When I was in first grade, I missed a month of school because I had what they thought was rheumatic fever. My pediatrician came to see me a couple times a week. That doesn’t happen so much now.

No. It doesn’t.

Dr. Klein: I suspect that’s had some influence because my parents really respected him. But I can’t articulate it for you. I never wanted to do anything else. It was not an intellectual decision. It’s just what I wanted to do. I was born wanting to be a doctor.

Dr. Ethan Basch is a Professor of Medicine at the University of North Carolina Lineberger Comprehensive Cancer Center. Prostatepedia spoke with him about having patients report symptoms via web-based portal.

Why did you become a doctor? What is it about patient care that attracts you?

Dr. Ethan Basch: I became a doctor because I like people and value direct service. Patient care is rewarding when I feel I can help people by providing medical knowledge that helps them make decisions, listening, and providing support and compassion, and by connecting them to other professionals or resources that can help them during difficult moments.

Do patients commonly report the majority of cancer treatment side effects to their doctors? What are some of the obstacles to those conversations?

Dr. Basch: Studies show that clinicians (doctors and nurses) are unaware of up to half of their patients’ symptoms. The reasons for this are complex. Between clinic visits, patients may be reluctant to call the office with problems or have difficulties getting through. At visits, clinicians might not ask about specific symptoms amidst other pressing discussion topics. There are also interpersonal dynamics that play a role. Patients might not want to “let their doctor down” by admitting to difficulties. Similarly, doctors might downplay patients’ problems because they are emphasizing positive rather than negative aspects of treatment. Electronic questionnaires bypass these various barriers. They enable patients to respond honestly to straightforward and systematic questions about issues they experience. This information is then conveyed automatically to clinicians.

How are doctors currently using newer technologies—like web-based portals or mobile apps—to make it easier for patients to communicate with them?

Dr. Basch: An increasing number of patient portal systems used by hospitals and clinics enable patients to self-report problems they experience. Clinicians can respond to patients within their usual workflow. There are also a growing number of mobile apps to facilitate this communication between patients and clinicians. These systems lower the barriers to reaching clinicians and facilitate better communication during and between visits.

Can you tell us about your study that looked at having patients use a web-based portal to report side effects?

Dr. Basch: We conducted a study asking a simple question: If we provide an online system for patients to report symptoms to their doctors and nurses during cancer treatment, will that improve outcomes? The answer was a resounding yes. In this study, we randomly assigned 766 patients to either usual care or to self-reporting common symptoms on a weekly basis from home or clinic with automated email alerts sent to nurses for severe or worsening problems. We found that compared to usual care, the patients who self-reported had significantly fewer emergency room visits, better quality of life, and were able to remain on chemotherapy longer because their symptoms were better controlled.

These findings together likely account for the most striking finding of the study, that the median overall survival was five months longer among those who self-reported.

Do you think such web-based portals can help doctors address side effects faster and more effectively?

Dr. Basch: Yes.

Are there any financial implications for reporting side effects electronically?

Dr. Basch: We found a significant decrease in emergency room visits when symptoms are managed through proactive electronic symptom monitoring, which is a potential cost savings.

Do you think patients are more likely to report certain side effects if given the opportunity to do so electronically than if they have to report them during an office visit?

Dr. Basch: Yes, this has been shown in prior scientific studies. Patients are more likely to disclose symptom information through questionnaires than in face-to-face discussions.

This is likely due to some of the reasons I mention above.

Is there anything else you’d like patients to know about your study or its implications?

Dr. Basch: It is important to reach out to your care team when you have symptoms.

If you were to do the study again, would you make any changes to the way you had patients report side effects—e.g., mobile app versus desktop portal versus text or newer apps/etc.?

Dr. Basch: We started this study more than a decade ago, and there have been substantial advances since then in health information technology and in patient/clinician familiarity with electronic tools. Today, we use newer approaches, including automated telephone systems and downloadable apps. Bots are on the horizon that will automatically elicit symptoms from patients and give advice, and wearable activity trackers will be integrated.

Any thoughts for doctors who may be reading this?

Dr. Basch: It is important to monitor patients’ symptoms between visits during systematic cancer treatment—treatment for most chronic symptomatic conditions, actually. Although there are logistical and workflow challenges associated with integrating patient reported outcomes into a practice, there are many benefits: improved communication, patient satisfaction, and clinical outcomes.